1
It’s Your Life
It’s Your Life A Practical
By Sangeeta S. Bhagwat
Handbook for Chronic Ailments
2
It’s Your Life
Notice: This book is intended as a reference volume only, not as a medical manual.
The
information given here is designed to help you make informed decisions about your health.
It is not intended as a substitute for any treatment that may have have been
prescribed by by your doctor. If you suspect suspect that you have a medical problem, problem, we urge you seek competent medical help.
All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. However, we welcome inquiries for wider distribution. For information informa tion contact
[email protected].
3
It’s Your Life
Introduction Health care care is now a major concern. concern. Stress, pollution, unhealthy lifestyles, lifestyles, even side-effects of drugs and treatment, have all contributed to a growing incidence of chronic diseases such as asthma, diabetes, hypertension, heart disease, kidney failure, failure, etc. A surprising number number of young people are being diagnosed with such such serious ailments. ailments. At the same same time, the the proportion of senior citizens in the population is also rising. The initial shock of a chronic disease diagnosis can overwhelm the patient and family.
This is an effort effort at providing assistance in coping with the
dramatically new life situation. Health awareness has prompted many to turn to new age or alternative therapies. However, even those preferring holistic holistic and alternative healing techniques, may be constrained to take recourse to allopathic treatment. This is especially true for serious/chronic illness, where life-threatening situations may be sudden and/or frequent. frequent. Hence, at least until there is significant improvement, you may be on allopathic treatment as well. During such periods, working with the system, instead of against it, can prove to be a helpful strategy. Stress, strain and fatigue of disease cause even obvious items to be overlooked. This handbook is intended to assist you in making the best of conventional treatment. It is your life. life. You will have to play the the most important part. The informed patient dramatically improves his own well being and possibility po ssibility of healing. He also makes an important important contribution to to the betterment betterment of health care. If an increasing increasing number of people take take an involved interest interest in
4
It’s Your Life
their health care, the the accepted standards standards will themselves improve. improve. Being resigned to existing conditions will only reinforce lethargy and complacence. This material is not a theoretical account account of what should be done. It has been compiled from over 12 years of personal pe rsonal experience, as a caregiver.
5
Your Pivotal Role Remember that the choice of treatment, doctor and health care unit, is ultimately yours to make. However, it is equally important for you to understand that with choice - will come responsibility re sponsibility.. You, yourself must be the one who shoulders the responsibility of maximizing your well being. If you regularly demonstrate negligence and carelessness with your own care, you cannot expect either your family or health care workers to offer you their best of patience and support. Also understand that if you ignore all the warnings, you are tempting fate. Too many factors are involved in fending off the worst, especially in a critical situation. You may not get enough time time to reach reach assistance, assistance, your doctor and the hospital. The correct diagnosis must must be made. The right life-saving equipment and drugs should be prescribed, be available and be in working order. The list list goes on. It is is in your interest, to do all that you you possibly can, to avoid such scenarios. You should be open to ideas, practices and therapies, which can significantly enhance well being. being. Your positive thinking, discipline discipline and diet, as also alternative support systems such as meditation, yoga, reiki, reflexology, massage, EFT, TAT, etc. can all a ll help.
6
It’s Your Life
Some Factors To Note:
Take inventory of your life ♦
Take complete complete inventory of your life. life.
It has been estimated estimated that a
possible 85 % of chronic ailments, such as acidity, cancer, diabetes, heart disease, hypertension, etc. are due to unhealthy unhe althy lifestyles. lifestyles. If you are fortunate enough to have had an early diagnosis, correcting your choices could prove decisive.
We usually usually avoid making radical
changes in in our life. The common common excuse is “I have no choice”. If you were to reframe your situation in the context of life versus death, you would be surprised at how many solutions become more acceptable. Would you prefer to live, that too more healthily, for another few years, or rather be the CEO? Try asking your your spouse if they would prefer another X amount in in the bank, or you living living for an extra 5 years. Ask your parents if they would rather you outlive them, or have you fulfill all their ambitions. Ask someone someone who lost a parent early, whether they would have preferred their parent to live another few years, or have had their substantial inheritance. inheritance. This may may seem a little dramatic, but only when you think in such extreme terms, do hard decisions become easier to make. If you find that your job is too stressful, or your house location unhealthy, the commuting too tiring or your lifestyle too hard to maintain, change it. Change the job, quit the habit, eat bland food, change houses, and even the city, if necessary. Make radical changes, changes, but choose health. health. The rest will will follow. follow.
7
It’s Your Life
Consider yourself lucky, to have been given the time and opportunity to make changes. changes.
Many face face their their sudden end in accidents, terrorist
attacks, calamities, etc., without any second chances.
Be an informed patient ♦
Medical errors happen when something that was planned as a part of medical care doesn't work out, or when the wrong plan was used in the first place. As an example of how real the threat threat is, consider consider this according to an Institute of Health report from 1999, about 98,000 people die in US hospitals each year, as a result of medical errors. A newer study suggests that an average of 195,000 people died due to potentially preventable, in-hospital medical errors in US hospitals, in each of the years years 2000, 2001 and 2002. Most errors result from the the complex health care care system, miscommunication or ignorance.
An
informed patient minimizes these risks for himself.
♦
First and foremost, learn as much as you can, about your disease/condition. Ask all the the questions you you need to, visit visit all the the web sites you must, read all the books you can, talk to other patients.
♦
Adequate knowledge about your condition helps maximize beneficial inputs and avoid aggravations. aggravations. This optimizes optimizes well being, on the the physical level.
♦
Carefully choose informed, appropriate sources.
Do not rely re ly on
hearsay/uninformed guesses. You could be putting yourself in in a lifethreatening situation.
8
It’s Your Life
♦
Try to keep abreast of latest developments in your disease treatment. This should include any adverse reports/cautions about existing treatment.
Discuss any viable viable treatment treatment options that you come across,
with your doctor. Any doubts about your treatment or medication, should also be checked with your doctor.
♦
Do not be afraid to question your doctors/other medical staff. Unfortunately, many people treat them like "Gods who are not to be questioned". It is your life. If you suspect negligence negligence or error, keeping keeping quiet will increase your anxiety and may further compromise your health. Most dedicated staff and doctors are more than willing, to calm and reassure you. If they are are at fault, they will immediately immediately apologize and correct the situation. situation. If they are are offended, rude or refuse refuse to offer explanation or correction, you should be reconsidering your choice of doctor or facility.
♦
For even the most dedicated and earnest doctors and staff, you are one of many. There is a limit to the the attention and time that they can give give you, as there are so many many more, demanding the same same attention. So it is your duty, to be as a s alert, informed and aware as possible.
9
It’s Your Life
Stay in the Present ♦
Feeling sorry or regretting the events/habits/"luck" that have brought you to this point, point, will serve no purpose. Avoid post-mortem of your your past habits and behavior. This will only cause further depression, resentment, anger and helplessness. All these are exhausting for the the mind and body.
♦
Deal with the present. present. There is scope for change change now, not to the past.
♦
Imagining the worst to come, endless days of tiring, painful treatment, whether you face a quick demise, further progress of the disease and it's consequences, effect on the people around you... all these are draining and useless thoughts.
♦
Take it one day at a time. Focusing on the present moment makes the whole situation far more manageable. It also makes you feel less hopeless.
♦
Most things become more bearable, if perceived to be of limited duration.
Be optimistic ♦
Do not allow the statistics statistics to depress you. Most studies are made on diseased people. Hence, not enough is known about those who who have had apparently healthy lives, despite dramatically "abnormal" test results. 10
It’s Your Life
♦
Each person is an individual. individual. No amount of data or averages can predict with 100% accuracy, how you you or your body will will progress. So keep upbeat and optimistic. optimistic. At the very least, your your reduced stress levels will will benefit your body.
Also Be Practical ♦
One of the prime worries faced by any individual, healthy or otherwise, is the concern for their dependents or surviving surviving family.
While they they will
eventually have to find their own ways to cope, you can certainly ensure that you minimize the difficult realities that they will have to deal with. Once you have dealt with this required house-keeping, most likely you will feel a little less stressed, for having done whatever is in your hands, for your loved loved ones. This frees frees you to focus focus on improving improving your health.
•
Make sure that you have made all possible efforts to put your affairs in order. Execute a proper proper will, do the necessary paperwork, make make all your intentions/wishes intentions/wishes as clear clear as possible. This way, you can lessen the possibility of your loved ones having to face the ordeal of disputes, squabbles, delays in receiving their inheritance, insecurity, shortage of funds, funds, etc.. etc.. .
•
As harsh as it may be, you have to consider the possible situations that may arise in the course of your disease taking a downturn. Clearly indicate your wishes regarding the extent of life-support treatment that that you should should be given. given. Better still, still, execute a proper witnessed statement to this effect, expressing your desires or intent
11
It’s Your Life
regarding limits to the type, extent, duration and cost of treatment that you should be subjected to. Absolve your family family and doctors doctors of this extremely difficult difficult decision decision making process. This will will also ensure that your wishes are honored, even if you are unable to communicate at that critical juncture.
•
If you wish to pledge your eyes, or donate any other body parts, or your body itself, register yourself or convey this information to your primary care-giver.
Be focused ♦
There is only one one way to be in in perfect health. health. There are infinite ways ways to be in disharmony/illness. disharmony/illness. Worrying about all the things things that can/may go wrong is an exhausting, useless and never-ending activity. Instead, focus on reliving perfection.
♦
Identify and and conquer your fears. fears.
Fear brings on more episodes and
problems, than anything else. Strengthen your resolve with with affirmations, affirmations, self-confidence and determination. If you you succumb to every fear that haunts you, you may may become become a helpless prisoner.
Focus on the the
determination to be well.
Diagnostic Tests ♦
No test is 100% accurate. Tests can be sensitive or specific .
A very
sensitive test is is unlikely to miss miss an existing existing disease. However, itit may falsely indicate disease, in a healthy person. On the other hand, a very 12
It’s Your Life
specific test is unlikely to indicate disease in a healthy person. But it may miss disease in someone unhealthy.
Keep this in mind, mind, when when you
look at your test results.
♦
Choose your testing facilities with the same care as your health care unit. Ensure that it has a reputation reputation for maximum accuracy and consistency.
♦
Due to technical reasons, in many cases, it is possible to get significantly different results, from from different laboratories. laboratories. To minimize the the resultant confusion and misinterpretation, it is advisable to do all your periodic tests at the same same facility. This allows for a more meaningful comparison comparison and better understanding of trend.
Medication and Treatment ♦
Make sure your prescription is legible and you have understood how to use it. it.
An unfortunately large number of medical errors occur due to to
misunderstanding the name and dose of the prescription.
♦
Do not change/skip prescribed medication/treatment, without informing your doctor. Allopathic medicines medicines can have dramatic adverse effects, if taken incorrectly. For instance, instance, blood pressure medicines medicines often often need to be tapered off in a prescribed fashion. Skipping a dose may may lead to sudden, dangerous rise in blood pressure.
13
It’s Your Life ♦
Regularly review your your medication medication and therapy with the the doctor. doctor.
Drugs
and treatment often require dosage to be adjusted or substitutes introduced.
♦
Possible adverse drug reactions are usually listed in the printed material provided with the the medication. They are also available on numerous numerous sites. Make it a point to look up the medication medication you are on and keep an eye out for any such symptoms. symptoms. Maintaining a log log of uncommon symptoms/discomfort, symptoms/discomfort, may be useful for this.
♦
Be frank, factual, concise and accurate when you report to your doctor. He requires reliable, relevant relevant and factual feedback feedback from you. This way, he too, can make well-informed well-informed decisions.
♦
Informed patients quickly earn their doctor's respect and are more likely to receive minimal minimal medication, tests and therapies. A complaining, undisciplined patient invites more of these, as the doctor is less likely to expect compliance from from the patient. Often the patient himself prefers to have more tablets/injections prescribed, instead of imposing simple disciplinary lifestyle measures on himself.
♦
Follow the diet diet restrictions and prescribed exercises exercises diligently. Ingesting yourself with restricted food, fluids, smoke or toxins will only result in your own discomfort. discomfort. It can can be risky, risky, expensive and result result in further medication and treatment, which could have otherwise been avoided.
♦
Inform your doctor about any alternative remedies that you are considering. Especially any any food or medicines medicines that you intend to to have orally. Allopathic treatment treatment and medication often have complicated complicated
14
It’s Your Life
adverse effects, effects, when combined with with certain certain food or drink. Alternatives may contain minerals or substances, which may be harmful for your specific condition. condition. It is safer safer to inform inform your doctor.
Diet and Nutrition ♦
Almost all chronic chronic ailments now have specific diets. Consult a nutrition nutrition expert and get to understand yours completely. Understand why certain certain foods should be avoided, what is their physiological impact and what substitutes can be had instead.
♦
Make sure you know which foods contain items you are supposed to avoid. For instance, when when advised a low salt salt diet, it is not sufficient to simply cut the table table salt in your diet. You also need to restrict restrict items containing monosodium monosodium glutamate and baking soda. soda. Many preserved preserved foods, pickles, sauces sauces and even jams, jams, contain high high sodium. You could get your daily intake analyzed by the dietitian, who can suggest suitable changes.
♦
Regulating your diet can can alone increase your well well being dramatically. It can also help in in reducing medication medication and treatment. treatment. Most patients patients are careless in this area, either because they underestimate it’s benefits, or find the prescribed diet unpalatable.
♦
Take the trouble to to find recipes, which which use allowed substitutes. There is so much variety in this world, that despite numerous restrictions, given the effort and commitment, commitment, you will surely find food to your liking. liking. This will bring you enjoyment and a greater g reater sense of "normalcy".
15
It’s Your Life
♦
Try and find at least one restaurant, where you can have appropriate preparations made for yourself. yourself. This will enable you to eat out with family/friends, again enhancing the feeling of "normalcy" and well being. Such small small details give huge psychological psychological boosts.
♦
Regularly review review your diet with with your nutrition expert. expert. It may may routinely require adjustment. As the diet usually imposes imposes restrictions for certain foods and a high proportion of others, this can, over a period, lead to imbalances. For instance, whilst whilst a high high calcium diet diet may have initially been recommended, there may come a point, when there is calcium overload. Such changes can can themselves lead lead to fresh symptoms. symptoms.
Be prepared for Emergencies ♦
Keep the emergency service numbers readily available, along with your own doctors'.
♦
Unfortunately, emergency services are not the same standard, world over. Hence, if you have a driver d river in the house, it would be a good idea to ensure that the car always has gas ga s in it.
♦
Keeping a blood pressure measuring device handy can prove useful. Blood pressure is a very important vital sign, which must be monitored carefully.
Check blood pressure pressure at the first indication indication of discomfort. discomfort.
Convey this reading to the health worker you call.
16
It’s Your Life ♦
Many serious ailments have medicines prescribed for emergency situations. For example, inhaler inhaler pumps for asthmatics, sub-lingual sub-lingual pills for angina or sudden sudden high blood pressure. If you have have been prescribed prescribed such emergency measures, measures, ensure that you always always have it handy. Keep one each, at home, in the car, at office, in your wallet/pill box, etc.. This can save precious minutes and hence your life.
♦
Oxygen is an invaluable life-saver, in many emergency situations. Consider keeping one of those small, small, portable tanks tanks handy. They are usually easily available in most drug stores.
♦
If your disease results in in frequent runs to the the Emergency room, keep a "kit" ready. This should have your medical medical papers- including last last E.C.G., blood & other reports, current medication & treatment, listed allergies if any, emergency medication, change of clothes, wallet, keys, phone, etc..
Also include include any other items that may be specifically specifically
required for your condition, such as nebulizers, oxygen cannula or tourniquets. Keep this kit with you, even when you travel.
♦
Do not panic. panic. This is easier said then done. But, find out what works best, in calming calming you. Examples range from simply trying to draw deep, steadying breaths, chanting your favorite mantra/prayer, clutching your cross/amulet/beads or even your loved one's hands. The important important thing is to avoid avoid all the consequences consequences of panic.
These include
hyperventilation, elevated pulse and blood pressure, release of stress hormones, etc.. All these these only aggravate the the episode and make itit worse for you. Also encourage your caregiver caregiver to practice being being calm in such such
17
It’s Your Life
situations. Their panic could cause cause confusion, inefficiency, inefficiency, and loss of time, plus further stress stress to you. you.
♦
Do not be embarrassed to ask for help or draw attention attention to yourself. If you are feeling uneasy, do not overstrain yourself or take unnecessary risks, just to avoid "public humiliation". Your life and well well being is in in your hands. Ask for for help help immediately. immediately.
Avoid unnecessary risks ♦
Even mild injuries injuries or infections can trigger major major complications. As immunity and overall health are already compromised, such events can result in grave consequences. Simple precautions would make life life easier. One must must not live in constant fear. fear. Yet, it would be prudent to avoid rash activities, eating unhygienic foods or exposing yourself to other aggravations.
♦
Do not put yourself in any discomfort, because you are too embarrassed to tell someone else, that you are being put in in some kind of risk.
For
instance, if you have a respiratory disorder, request a smoker to leave the room, if you can’t move yourself.
♦
Use common sense, keeping your specific condition in mind.
•
Examples:
•
If you have a heart disease or hypertension, avoid climbing stairs or rushing around.
18
It’s Your Life •
If you have diabetes, be careful around knives, tools or other sharp objects. Use good quality footwear.
•
If you have any respiratory disorders, avoid passive smoke, dust or other such allergens.
•
If you have osteoporosis, be careful on wet wet surfaces. Keep anti skid mats mats wherever required. Do not not lift lift very heavy items. Use staircase railings and a walking aid, if required.
•
For renal failure patients, catheters or fistulas are critical to the dialysis treatment.
Ensure that these are always adequately
protected from any possible harm.
Accept support ♦
Accept any financial, emotional or physical help offered by well-wishers. There is only so much much that you can do by yourself. When the universe is bringing you help, accept it gracefully. Do not allow false pride to step in. For others, itit is an opportunity to to feel better better about a situation situation that they otherwise feel helpless about.
Adopt a healthy lifestyle ♦
Practice the common denominators of good health, advocated by holistic and allopathic practitioners practitioners alike. alike. These include, include, in random order:
•
basic exercise like walking (beneficial in most diseases)
•
meditation
•
creative hobbies
•
networking with family and friends 19
It’s Your Life •
music
•
relaxation
•
massage
•
hygiene (especially when eating out, or if you have allergies) a llergies)
•
humor
•
positive thinking
•
abstinence from alcohol/smoking/recreational drugs/red meat.
Reinforcee Inner Strength Reinforc ♦
Battling disease is as much a test test of mental as physical strength. strength. Work on increasing increasing your faith and personal belief.
Whether it is religion,
spirituality, faith in God or simply self-confidence, any of these can prove to be the the decisive factor factor in your recovery. There are any number of books, guides and doctrines for you to choose choo se from.
Try safe alternative treatments ♦
Choose your alternative therapy, keeping in mind the dictum “First, do no harm”. Once this condition is met, try try all possibilities. possibilities. You are free to make every effort effort to improve your your health and heal yourself. In fact, you you must. Disregard the the skeptics skeptics or those those with critical opinions. The fact fact of the matter is, that with the intrinsic instinct for survival, almost every person would try any viable option. It is easier to be rigid rigid in thinking, thinking, when you are not faced fa ced with chronic disease.
20
It’s Your Life ♦
The possibility of serious side effects from allopathic drugs and intervention treatments is well acknowledged. acknowledged. You can use Reiki Reiki to channel to medication and apparatus, requesting only experiencing benefits from them. Similarly, the Sanathana Sai Sanjeevinis include a Neutralize symbol, which effectively nullify any negative effects of the medication/therapy. For a free download of the entire Sanjeevinis, visit visit www.Saisanjeevini.org.. You can purchase the author’s book on EFT www.Saisanjeevini.org ‘Emotional Freedom Techniques’ from online book shops or from the publisher at: http://wisdomtreeindia.com/catalogue.asp?crids=11 . EFT is now known to often provide immense relief with many physical and emotional issues.
♦
Even the greatest skeptic skeptic will see no harm in in such cautious options. So you have a great deal to gain and nothing to lose, by trying it out for yourself.
Network with others ♦
No one, other than someone who has had similar experience, can truly empathize with you. you. Even your caregiver will will be able to relate better with another caregiver. Amazing relationships re lationships can develop between families of fellow patients.
Common experience of serious disease events, may
bond people together, more than years of acquaintance can. Join or start a support group.
♦
Look out for the the people around you as well. Being genuinely concerned concerned and involved with others, will make you less self involved, less depressed and avoids self-pity.
21
It’s Your Life
If something works for you, suggest it to others.
♦
Continue interaction with your your family family and friends friends as well. well.
Sheer
exhaustion makes a social social life difficult. difficult. But don’t neglect neglect the people who matter to you. you. Remember to be patient with with them. Fighting for your life can make other people’s travails seem unimportant. However, that is is the the worst they they have known. known. Avoid a condescending condescending attitude and be understanding instead. It is very likely likely that they cannot cannot even imagine what you deal deal with. Often, they simply do not want to. Because they cannot cope with the idea of their loved one enduring such difficulties. Understand and accept this. this.
This imbalance in in perception perception can make make
relationships tricky. tricky. It is upto you, to ensure that you nurture those those that matter to you.
Pay attention to your care-giver •
If you are fortunate enough to have a loving family or care-giver, be thoughtful to them them as well. They are often stressed, stressed, overworked, exhausted and depressed depressed themselves. Try to see that they receive adequate rest and take ta ke care of themselves too. They need both mental and physical strength, to take care of the added responsibilities. You may be be the one experiencing physical physical and mental mental trauma, but recognize that they too, consequently, face their own ordeals. Supporting each other, will give you the strength and courage to return to your natural natural state of complete complete health and well being.
22
Your Health Care Unit
Certain diseases require require regular visits visits to the health care unit. This may be for either treatment or check-ups. A comfortable, efficient environment goes a long way in reducing reducing your strain. To minimize minimize the possibility of additional complications from infection, negligence, lapses or error, choose your unit with some care.
Some factors to note:
Has someone responsible and knowledgeable, for instance a nurse or medical social worker, been designated to answer all your queries and misapprehensions completely? Chronic disease management is difficult and intimidating, at the outset. You and your caregiver need to learn as much as possible, as quickly as possible.
Basic treatment, diet and lifestyle lifestyle changes changes should be
explained. All queries should be answered. answered. If this this is not done at the the beginning itself, you may inadvertently cause further damage to yourself. Support and counseling is also necessary to cope with the huge impact of the diagnosis.
23
It’s Your Life
Have you been explained the foreseeable risks, costs and duration of medication/treatment beforehand? You need to plan your future future lifestyle and funds. Get to understand all the consequences of your choice of treatment, beforehand. befo rehand. For instance, if you are opting for a transplant, find out the lifestyle restrictions, medication and check-up routine, that will be imposed subsequent to the transplant. Also understand the risks risks involved not only only in the transplant itself, but also in the future.
When you/your relation is required to sign consent forms, are you given time to read and understand what it is that you are signing? While the consent form is meant to protect their legal rights, it is also meant to provide you with adequate information. Unfortunately, consent forms are usually required only for risky procedures, that too often during a crisis. crisis. At such such point, you have little time or choice. However, the the form will give you complete information about the potential risks and you can still make make a hard decision. Besides, the transparency and attitude attitude of the health care unit are clearly revealed revea led in how this matter is dealt with.
Ensure the unit is hygienic and clean. Basic cleanliness cleanliness and hygiene is a must.
Verify that that the unit and
equipment is disinfected disinfected at regular intervals. intervals. Items, especially especially medicines, needles, etc. must must be kept in in an organized, neat fashion. fashion. This way, way, no time is lost in locating the right item. 24
It’s Your Life
While this may seem an obvious requirement, many of the smaller nursing homes, labs, etc. e tc. fall short of minimum standards.
Do they have adequate and well-maintained equipment for regular and emergency treatment? You could be surprised to find that units are often short of equipment. Ventilators and other sophisticated equipment may not even be present. If the unit is well equipped, you still need to confirm that regular maintenance and disinfecting is carried out. Your regular treatment may be compromised, without your knowledge, if the machines are not maintained maintained properly. Further, at a crunch moment, a failed machine could cost you your life. You can ask your doctor or the nurse/technician in charge, to answer all these queries. Always inquire inquire with other patients as well.
Are disposables dealt with in the prescribed fashion? There are standardized norms for disposing used medical supplies. These are meant to protect the staff, the patient and also those who handle the dispose. It is important that they are implemented so that you, amongst others, are protected from unnecessary exposure to additional add itional disease risk. The more the public awareness, the better will be the implementation. So ask the staff these questions.
25
It’s Your Life
Are adequate measures taken in respect to infection and transmission control? Does the staff routinely disinfect their hands, use masks, hair-nets, etc. and change gloves, as and when required? Often, they are dealing with more more than one patient at a given given time. If they continue working with the same gloves, they are adequately protected, but you are not.
Is the staff compassionate and considerate in their behavior? One of the greatest contributors to alleviation of fear is simple kindness and compassion. It even gives you more strength to deal with the pain and discomfort of your procedure. Ensure that you feel comfortable and looked after. Human nature differs. differs. Short-tempered, rude, rude, aggressively authoritative health care workers workers can increase increase your discomfort and or anxiety. Some may tend to work at great speed, even while performing delicate procedures. As this is routine to them, so even even at speed, they they may be efficient. However, to to you, this this can be disconcerting. All this can lead to physiological changes such as increased blood pressure as well. well.
Avoid units where they do not take take the trouble trouble to
correct such behavior amongst the staff.
26
It’s Your Life
Is the staff attentive to your reactions/discomfort to the ongoing treatment as also any malfunction malfunction in the equipment? Subsequently, do they immediately take remedial action? Most machines machines are computerized computerized and have built in alarms.
But the
attending staff should be alert to any such messages or your symptoms. They should also be quick qu ick and capable of remedial action. In long treatment sessions, such as dialysis, careless staff has been known to wander off, onto a break. They may not even be in the vicinity, vicinity, to hear the alarms. alarms. In such cases, the patients themselves themselves have to be alert to any oozing blood or drop in in blood pressure. They are also also forced to rely on their care-giver, to go and seek out assistance. If you, or your caregiver, are forced to monitor your own treatment, on a frequent basis, the unit is not of an appropriate standard.
Is the general ambiance supportive and reassuring, or stressful and rushed? Body language and staff attitude acts as an index of their confidence and efficiency.
If the staff is stressed, rushed rushed and anxious, it is highly
unlikely that they can provide their best service. On the other hand, calm, collected and composed staff is better able to provide care, thoughtful attention and efficient treatment.
27
It’s Your Life
Have you verified the charges?
Most hospitals have a fixed fixed “discharge “discharge time”. time”.
Hence, if you you are
discharged after this specified time, you may be charged for the next day. Consumables such as dialyzers, blood lines, oxygen masks, gloves, etc. and even some medicines, may be priced differently across various hospitals. Almost all hospitals charge different rates from inpatients and outpatients, for the same procedure.
There may be extra
charges for
late/unscheduled procedures/visits p rocedures/visits.. Within the same hospital, charges for procedures, doctors’ do ctors’ visits, visits, etc. can vary with the admission category that you choose. Check your bills carefully, particularly if the listed medicines, procedures, doctors’ visits etc. are factual.
28
Your Doctor
Ensure that your doctor is someone someone you can trust. Make adequate inquiries inquiries with other patients, meet with the doctor yourself and check on his/her experience. Only then select select your doctor. Remember, Remember, this may may be a longterm relationship and one, which can affect not only your well-being, but also your longevity.
Some factors to note:
Does the doctor have a good rapport with his patients? It is important for you you to feel comfortable with with your doctor. This allows allows you to speak freely about your symptoms symptoms and fears. Some doctors make make that extra effort, to develop a reassuring and comforting relationship with their patient. Speaking to someone who can recall at least your name and outline case history, without without referring to your your chart, is a valuable asset. This is is a reasonable expectation in chronic diseases, as you see your doctor on a frequent and regular basis. Such minor details boost your confidence in the doctor.
It also improves improves your chances of receiving personalized
attention to your individual problems.
29
It’s Your Life
Does he have the experience and credentials appropriate to your condition? Everyone is aware that today, the complex medical system require specialists to deal with each aspect of your disease. But, even within within the specialists, doctors tend to gain experience and expertise in micro-levels of their own specialties. specialties.
Keep this this in mind, whilst whilst selecting your your
specialist. For instance, if you require surgery, try and find someone with the maximum experience in your particul pa rticular ar procedure.
Is he available ava ilable during emergencies? You cannot expect any doctor to be available to you 24 hours, 7 days a week. They need their rest too. However, does the the doctor offer you all his contact details? Does he at least try and make himself himself available as much as possible? possible? Does he offer a colleague colleague of equal capability, capability, during long absences? Or instead, do you find it almost impossible to even speak to him, during emergencies? Just as you have a primary doctor who remains unavailable to the patient in his “off-hours”, “off-hours”, you also also have the other kind. These will respond in the middle of the night, to not only their own, but even another doctor’s patient. Ideally, you should find out about your doctor’s attitude, from other patients. You should not not find yourself yourself in the the unhappy position position of not reaching your own doctor, in an emergency.
30
It’s Your Life
"Big names" may not translate into appropriate choices. Reputed doctors may have become complacent, resting on past laurels. Very often, they are only nominal Heads of Department in many hospitals.
Further, not all of them make it a point to stay abreast of
current developments. You may have to wait long periods, before you can see them. More than likely, even once you manage an appointment, they have little time to spend with each patient. Individualized attention can be more meaningful, appropriate and effective, than all the technical technical expertise or knowledge. knowledge. If your doctor has not understood the idiosyncrasies of your body, all his expertise may prove irrelevant to your healing.
Do
commercial
factors
influence
the
doctor's
choice
of
investigation/treatment? Unfortunately, kickbacks have become a common practice these days, even in the medical medical profession. Some hospitals set "targets" "targets" for their their panel doctors. Peer pressure demands that the referral referral network keep operating. Such
factors
influence
doctors,
into
prescribing
unnecessary
tests/medication/treatment. There have been known instances of doctor’s blatantly inquiring about your insurance or family fortunes and subsequently prescribing expensive investigations and even treatments. If you suspect suspect this about the doctor, seek a second opinion. 31
It’s Your Life
There are also doctors doctors who are solely dedicated to healing. They ignore ignore the patient’s ability to pay them, instead focus on providing the best possible treatment. Try to find find out more about about your doctor's commercial interests. Here too, too, other patients or a trusted family GP, may provide p rovide more information.
Is he open-minded about your choice of treatment? Your prime objective is to be healed. This is also true of your doctor. Many accept and understand your trying harmless alternative therapies. Some may may even encourage it.
The key key word word here is “harmless”.
Resisting alternatives because of any potential harm, is a justified stance. It is also caution that you must pay heed to. However, resisting or ridiculing attempts at any other mode of treatment, purely out of a scorn born of ignorance or limited knowledge, is avoidable.
Does he pay attention to the patient's observations? If you provide factual and concise reporting of symptoms, adverse reactions, positive results, etc.. your doctor should pay careful attention to these.
Dismissing Dismissing your your observations, observations, especially when they they are
unexpected or unusual results, could lead your treatment in the wrong direction.
32
It’s Your Life
Does he keep himself updated up dated on latest developments in his field? Research and development development is making making giant strides strides these days. days. As the knowledge base is rapidly increasing, new remedies and treatments relevant to your disease will be available to you, provided your doctor knows about them. Equally important, is his awareness of latest adverse reports on previously accepted treatment/medication. treatment/medication.
There have been numerous
instances of drugs/treatment being withdrawn, due to subsequent discovery of risks. risks.
In other cases, drug usage usage has been found found harmful
in certain diseases, while tolerable in others.
Has he offered you all possible treatment choices? You have a right to know know all your options options and corresponding risks. risks. The choice is yours to make. Regardless of the cost/insurance limitations, limitations, you must be given an opportunity opp ortunity to make a realistic evaluation.
Does he support and encourage second opinions, if you y ou so desire? A conscientious doctor, who takes all possible care, has no reason to discourage second opinions. opinions. In fact, he is more more than likely to suggest this himself. Be wary of the doctor who who grows upset, unreasonable or unco-operative at the mention of a second opinion.
33
In Conclusion
Just as when you first hear the diagnosis, the ensuing changes too, can be overwhelming. The sheer sheer number of items items to be be monitored and the precautions to be taken, seem daunting. There can be be moments of complete exhaustion and despair. All your your efforts seem to be getting you you nowhere. But if you you can withstand withstand these testing times, like all things, “This too, too , shall pass”. With time, habits are reformed. second nature.
Discipline and pragmatism become
Courage and inner strength emerges.
This entire
handbook includes those practical suggestions, which have been tried, tested and proven the the hard way - experience. They have often made made the difference between life life and death.
Given the resolve, resolve, they can be
implemented. You may be taken aback to eventually find that a large number of positives can emerge from the experience. Character, strength, resilience, patience, organization skills, skills, values are all honed and strengthened. This change change may manifest in the entire family. family. Many develop a new understanding of philosophy, religion and spirituality. You discover your true friends. You have been brought an opportunity for inner growth and understanding.
How you you deal with itit will will decide how the disease
transforms you. Whether for for better, better, or worse. worse. 34
It’s Your Life
Again, I reiterate, reiterate, this is not a theoretical proposition. I have personally personally seen, more than one near and dear one, demonstrate how to conquer chronic disease.
The enhanced quality of your life will reflect your
triumph.
35
It’s Your Life
36
